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A dataset up to 2005, including contributions from amyotrophic lateral sclerosis patients, will be added to the pooled resource open-access ALS Clinical Trials or PRO-ACT database at Massachusetts General Hospital.
The database, part of MGH’s Neurological Clinical Research Institute, includes anonymized data from 29 clinical trials and 11,685 patient records.
ALS is a progressive motor neuron degenerative disease, and only 25% of patients survive more than five years after diagnosis, according to an announcement made Wednesday during ALS Awareness Month.
is a big part of the story of the establishment of the disease PatientsLikeMe, based in Cambridge, Massachusetts said Chris Renfro-Wallace, chief operating officer of PLM. The company is contributing de-identified data to PRO-ACT to accelerate efforts to find a cure.
Renfro-Wallace said in a statement, “We know that partnering with the scientific leaders at MGH is the best way to respect patients’ trust, to ensure that their data is used for good. Is.”
PLM, an open participatory research platform, was established to help patients monitor their health and improve their outcomes. It is also intended to aid researchers in their efforts to develop better health outcome measures that reflect a patient’s experiences with a disease.
“As a result of the severity and rarity of ALS, advocacy and patient support groups, such as PLM, serve as valuable resources for patients throughout their disease journey as well as a repository of research data,” said director of the Center for Alex Sherman said. Innovation and Biomedical Informatics at NCRI and a principal associate in neurology at Harvard Medical School.
According to leaders at analytics and connected intelligence company IQVIA Healthcare IT News Health Equity reached out to Last Year for a story on the role of data, patient-generated data sources are a game-changer because they can provide a holistic view of patient care journeys.
The de-identified patient data of PLM will be hosted and maintained by NCRI and will be available by request on CIB’s website.
Andrea Fox is a senior editor for Healthcare IT News.
Email: afox@himss.org
Healthcare IT News is a HIMSS Media publication.
